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Everything posted by angelloz

  1. 12 years ago I had a tetanus booster. I was 50 years old. Two days later began my journey with autonomic dysfunction. It took about 6 years to improve and get some of my life back. I now need my booster again. I know there is no way to know for certain that the booster was the cause of my autonomic dysfunction. I am scared however. I don’t think I can go through those early years again. I was bed bound etc. My doctors cannot promise that there is no correlation. I live on a farm and often get cuts. Any thoughts?
  2. I used to get very forceful heartbeats when I rolled over. It has finally stopped but took several years.
  3. Suddenly developed edema. Could it be the salt loading? I have done this for 12 years without issues. I see my doctor’s nurse Thursday. Will see what they say. Has anyone else had this issue?
  4. Well my breathing troubles continue along with chronic dry cough....this has been going on for months along with my dysautonomia returning. Had chest CT , heart work up etc... I guess next is a pulmonologist . I had this a bit the first time around but way worse this time. Breathing takes so much work and feels like I'm not getting enough oxygen. My pulse oximeter is 98 most of the time. Can go down some when upright and moving around but not always. I am wondering if anyone else has the odd cough? Hope everyone is doing as well as they can.
  5. Well I have been having some of this too. I too drink water deep breathe and try to lay so I don't hear the pounding. I think mine may be heart related. I am 62 and having new issues. Having some tests done. I had this at times too when I was younger and only had autonomic dysfunction so don't over worry. Hang in there!
  6. I have this as well. I have a question. If you can manage to go to sleep does it go away then . So if you stir in the night do you notice it? With neuralgia and things like atypical tooth pain it is usually gone in the morning then returns rather quickly. Some days are worse than others. Amitriptyline helped me but I stopped it for some issues I was having. Ice at night does help me. It is miserable and having multiple things to deal with just doesn't seem fair. There are many medication combinations that can help.
  7. I am 62 years old and with salt and fluid loading have had very few issues for the last five years...then started having nausea, breathing issues, a slight dry cough. One night I had arm and shoulder and chest pain and went to the ER. Heart EKG ,Troponin, looked good. Had a nuclear stress test to be certain heart is OK. That was fine. Now I am home, can't stand for long without chest, arm, back pain, breathing labored, some nausea. Feel awful. The first time around I had similar issues but no pain. I am going back to the cardiologist but wondered if anyone else had any type of " heart related " pain that comes and goes. Thanks in advance.
  8. Hello all, I am finding on my worst days I have low pulse pressure. I have checked my BP machine at the doctors and it is accurate. One day I felt so badly I called the nurse with a pulse pressure of 11...she told me it couldn't be that low. When I research low pulse pressure it doesn't mention dysautonomia...only other severe aliments. Does anyone else have this issue? What is the cause? Do I treat it like low BP with fluids etc? Sigh.....
  9. I used to do this all the time at the beginning. Not certain was causes it but would be doing the dishes and realize I was sort of holding my breath and not breathing. I had to remind myself.
  10. MomtoGiuliana, I also have had a relapse after many years and my B12 and D was discovered to be low? Strange? Also, I used to have autonomic storms and a doctor told me low blood volume can actually cause panic attacks. They have a physical cause.
  11. Hello to all, I was diagnosed with autonomic dysfunction around age 50. I won't go through the horrid list of symptoms as you all know them:). After about 5 years my health improved greatly. Best thing for me was salt and fluid loading. I am now 61 and things are suddenly awful. BP drops are back, temperature dis-regulation and now nothing is moving through my stomach, trying to stay hydrated and barely eating. I have upcoming tests. The one change in my life was starting the NEW oral CGRP medication Ubrelvy for my migraines. It was helping with that and I took it for several months. I have now stopped . I am afraid it has wrecked my body again. It is so new I seriously doubt all side affects will be known for years. I'm not sure what I am asking but I am so scared I ruined my health. I don't think my body can fight through this again. Sigh....
  12. I get those reading frequently and have been diagnosed with low blood volume. Medications cause a migraine increase which leads to vomiting...so I salt and fluid load.
  13. I always became sleepy from benadryl until my dsyautonomia. Now it makes me feel nervous and uncomfortable.
  14. At the beginning I believe mine was overactive , just like Stark mentioned. I never got sick, stopped having cold sores etc... As I have improved over the years I am now getting colds. and illnesses that are going around. Go figure.
  15. Low potassium was one of the few things that always showed up in my blood work at the beginning of my journey. it is still low but not as low as at the beginning. I see this many times from patients with autonomic dysfunction. You would think it would be a clue!
  16. To all, it has been 10 years since I began my dysautonomia issues. I am now 60. In the beginning I was fairly bed ridden. Breathing was off, sleeping was impossible as my body would jerk awake often. Odd dreams, off vision, blood pooling, tachycardia, low blood volume, going to stores and feeling off kilter, weight loss and on and on. I made trips to the Mayo Clinic, saw many physicians, you all know the drill. Slowly, things have improved. I will never be the same but most every issue has lessened in intensity. Salt and fluids are my best friends. I just wanted you to know that things can get better even when it may take quite a long time. I wish I could feel the way I was before my illness but I am so very grateful for the gains I have made. For those just starting with all of this, hang in there!
  17. I also wanted to mention that although temperature issue have improved somewhat over time, I still get blazing hot every night a few minutes after I lie down then it eases. Positional change? That’s all I can come up with. I did have a sweat test done a few years ago that showed reduced sweating on some areas of my body. Oddly, an area on my forehead that they said they see on migrainers. I have had chronic migraines for 30 years.
  18. At the beginning I had problems with temperature regulation. I would shiver and chill and go sit outside on a very hot day...then suddenly become so hot I would feel ill. This symptom slowly improved over time but still pops up now and again. Ice on my wrists for heat and sometimes a hot bath was the only thing that would warm me up.
  19. Hello all, Well this is new. I have nausea with migraines but I am having nausea every morning lasting quite awhile. Have have autonomic dysfunction for 10 years so this is new. I take tylenol daily so I am checking on that. I don't take more than 1000 miligrams in a day. Also eat a high fat diet trying to gain some weight and I don't have a gallbladder so???? But have been eating high fat for awhile. always something :(.
  20. The morning has always been the worst for me!
  21. Same here!!!! Low pulse pressure and I feel terrible but no doctor has really said much about this when I bring it to their attention.
  22. The first test for autonomic issues would be a tilt table test. Symptoms very quite a bit from person to person. I do sometimes get surges that wake me up. They give me a bit of a scared feeling for no reason. Perhaps discuss a tilt test with your doctor.
  23. I have low blood volume diagnosed through a hemodynamics test. I had this done at the Cleveland Clinic. My blood work often shows low potassium levels. This was one of the only findings I had in the beginning.
  24. I have heard that if a positional change , like leaning forward, changes the severity is a good sign but definitely get it checked out. That is my plan!
  25. Thank you for all the input. Didn’t receive any meds at the hospital. See my cardiologist in a couple of weeks. It is so helpful to be able to share experiences. Since my autonomic issues I get so stressed.
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